End-of-life & palliative care websites American Academy of Hospice and Palliative Medicine http://www.aahpm.org AAHPM is an organization for physicians who are committed to furthering and fostering the practice of hospice/palliative care for the terminally ill and their families. American Academy of Pain Management http://www.aapainmanage.org This resource provides the names of credentialled pain practitioners and pain management programs by zip code; offers direct access to the National Pain Data Bank for outcome measurement; provides links to other pain-related sites; has information about the agenda for the annual clinical conference in September of each year. American Academy of Pain Medicine http://www.painmed.org/ The mission of the American Academy of Pain Medicine is to provide for quality care to patients suffering with pain, through the education and training of all physicians, through research, and through the advancement of the specialty of Pain Medicine. ABCD- Americans for Better Care of the Dying http://www.abcd-caring.com ABCD is a non-profit coalition of citizens and professionals united to ensure that public policy addresses the needs of individuals and families coping with a fatal illness. Agency for Health Care Policy and Research http://www.ahcpr.gov/ AHCPR is the lead agency charged with supporting research designed to improve the quality of health care, reduce its cost, and broaden access to essential services. The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) http://www.acponline.org/index.html ACP-ASIM is a medical specialty society designed to enhance the quality and effectiveness of health care by fostering excellence and professionalism in the practice of medicine. Website list 1
The American Geriatrics Society http://www.americangeriatrics.org/ AGS is a professional organization of health care providers dedicated to improving and effecting change for the health and well being of all older adults. American Pain Society http://www.ampainsoc.org APS is a non-profit multidisciplinary educational and scientific organization dedicated to serving people in pain, through research, education, treatment, and professional practice. American Society for the Advancement of Palliative Care http://www.asap-care.com ASAP Care is a personal effort to help expedite the reform of terminal health care practice. American Society for Bioethics and Humanities http://www.asbh.org ASBH is a professional society of individuals, organizations, and institutions interested in bioethics and humanities. American Society of Law, Medicine and Ethics http://www.aslme.org ASLME provides high-quality scholarship, debate, and critical thought to the community of professionals at the intersection of law, health care, policy, and ethics. American Medical Association http://www.ama-assn.org:80/about.htm The AMA is a membership organization of physicians. It serves as the patient's advocate, sets standards for the profession of medicine, medical education, policy matters, and much more. Approaching Death: Improving Care at the End of Life http://www2.nas.edu/hcs/21da.html This report, from a committee of the Institute of Medicine, calls for changes to improve end-oflife care, better training of health care professionals, reform of outdated laws that inhibit the use of pain-relieving drugs, and testing of new payment options. Website list 2
Association of Cancer Online Resources, Inc. http://www.medinfo.org The Association of Cancer Online Resources, Inc. (ACOR) is a non-profit patient advocacy organization founded to develop, support, and represent Internet based resources providing high quality, up-to-date information and support to cancer patients, and to provide open communication channels between and among patients, health professionals and research scientists. Better Health http://www.betterhealth.com/ Better Health is an online interactive forum offering support and help on a variety of medical concerns and conditions Cancer Net http://cancernet.nci.nih.gov/ Cancer Net is a wide range of accurate, credible cancer information from the National Cancer Institute. The comprehensive cancer database includes summaries on cancer treatment, screening, prevention, and supportive care as well as information on ongoing clinical trials. Caregiver Network http://www.caregiver.on.ca:80/index.html Based in Toronto, Canada the goal of CNI is to be a national single information source to make your life as a caregiver easier. Caregiver Survival Resources http://www.caregiver911.com/ Caregiving is becoming a significant issue for many people. This resource provides help to others to cope with the demands of caregiving. Catholic Health Association of the United States http://www.chausa.org Catholic-sponsored health organizations provide the aged and chronically ill population with a broad spectrum of high-quality professional services. Website list 3
Center for Disease Control and Prevention http://www.cdc.gov/ The mission of CDC is to promote health and quality of life by preventing and controlling disease, injury, and disability. Center for Medical Ethics and Mediation http://www.wh.com/cmem The Center for Medical Ethics and Mediation is an educational association dedicated to providing quality training, research, consultations and mediations for healthcare professionals and organizations. Center to Improve Care of the Dying http://www.gwu.edu/~cicd CICD is an, interdisciplinary team of committed individuals, engaged in research, public advocacy, and education activities to improve the care of the dying and their families. Choice in Dying http://www.echonyc.com/~choice/ The nonprofit organization provides advance directives, counsels patients and families, trains professionals, advocates for improved laws, and offers a range of publications and services. Chronicle of Philanthropy http://www.philanthropy.com/ The newspaper of the non-profit world. Clinical Care Options-HealthCare Communications Group http://www.healthcg.com/ A state of the art medical resource for healthcare professionals. The Commonwealth Fund http://www.cmwf.org/index.html The Commonwealth Fund engages in independent research on health and social policy issues. Website list 4
Death, Dying and Grief Resources http://www.katsden.com/webster/index.html This web site represents a large and comprehensive collection of Internet resources with a holistic perspective of the death process. Death NET http://www.rights.org/~deathnet/open.html DeathNET is an international archive specializing in all aspects of death and dying with a sincere respect for every point of view, encompassing the legal, medical, and cultural aspects of human mortality. Department of Health and Human Services, Healthfinder http://www.healthfinder.gov healthfinder is a consumer health and human services information web site, which can lead you to, selected online publications, web sites, and not-for-profit organizations.. Dying Well http://www.dyingwell.com/ Defining Wellness through the 'End of Life': Resources for patients and families facing lifelimiting illness. Eldercare Web http://www.elderweb.com/index.shtml Eldercare Web, is a collection of reviewed links to on-line information about health, financing, housing, and other issues related to the care of the frail elderly. Elizabeth Kubler Ross, M.D., On Death and Dying http://www.doubleclickd.com/kubler.html Elizabeth Kubler-Ross, M.D. is widely recognized as one of the foremost authorities in the field of death & dying. On Death and Dying, is required reading in most major medical and nursing schools and graduate schools of psychiatry and theology. Website list 5
EPEC Project http://www.ama-assn.org/ethic/epec The Education for Physicians on End-of-life Care (EPEC) Project, supported by a grant from the Robert Wood Johnson Foundation, is an ambitious two-year initiative designed to educate physicians across the United States on the essential clinical competencies in end-of-life care that every physician should have. Extended Care Information Network http://www.elderconnect.com/ The Extended Care system matches patient needs with providers or agencies that can accommodate them and produces a professional package of information to be presented to the patient and their family with information about any providers/agencies they might want to look into. FACCT -- The Foundation for Accountability http://www.facct.org/ FACCT works to ensure that Americans have clear, accurate information about quality that they can use to make better health care decisions. The Foundation Center http://fdncenter.org/index.html The Center collects, organizes, analyzes, and disseminates information on foundations, corporate giving, and related subjects. Grantmakers in Health http://www.gih.org/ The mission of GIH is to increase the capacity of private-sector grantmakers to enhance the health and well being of all people. Growthhouse http://www.growthhouse.org/ This web site is an international gateway to resources for life-threatening illness and end-of-life issues. Website list 6
Hemlock Society USA and PRO-USA http://www.hemlock.org/hemlock/index.html For those who support the rights of the terminally ill to choose death with dignity, who support personal control and autonomy in end-of-life decisions, and who believe that laws should allow a terminally ill person the choice of medical assistance in hastening their death Idealist http://www.idealist.org/usfound.htm With 14, 000 organizations under one roof, this site will allow you to look for organizations, volunteer and job opportunities and much more. International Association for the Study of Pain http://www.pslgroup.com/dg/1ff02.htm IASP is open to scientists, physicians, dentists, psychologists, nurses, physical therapists, and other health professionals actively engaged in pain research and to those who have an interest in the treatment of pain. Last Acts http://www.lastacts.org Last Acts is a call-to-action campaign dedicated to improving end-of-life care through the sharing of ideas and solutions by professional care givers, institutions and individuals. Lindesmith Center http://www.lindesmith.org/about_tlc/pain.html In response to inquiries from state legislatures, medical examiners, regulators, and doctors regarding the appropriate use of opioids by physicians, the boards of directors of APS and AAPM have promulgated a consensus statement, Use of Opioids for the Treatment of Chronic Pain. Medical College of Wisconsin Palliative Care Program http://www.mcw.edu/pallmed/ This program is committed to improving care for the dying in America through the development, implementation and dissemination of innovative education and clinical care programs. Website list 7
Medicare Rights Center http://www.medicarerights.org The Medicare Rights Center (MRC) provides free counseling services to Medicare beneficiaries who cannot afford private assistance for Medicare-related issues. Memorial Sloan Kettering Cancer Center http://www.mskcc.org Memorial Sloan-Kettering Cancer Center's web site provides a wide range of information for medical professionals, patients, their families, and the general public. National Association for Home Care (NAHC) http://www.nahc.org/ NAHC is committed to serving the home care and hospice industry, which provides services to the sick, the disabled, and the terminally ill in the comfort of their homes. National Conference of State Legislatures http://ncsl.org/programs/pubs/endoflife.htm The NCSL report helps state lawmakers make informed decisions regarding assisted suicide; pain management and other end-of-life care policies. The National Institute on Aging http://www.nih.gov/nia/ NIA promotes healthy aging by conducting and supporting biomedical, social, and behavioral research and public education. The National Center for Health Statistics http://www.cdc.gov/nchswww/about/about.htm NCHS provides statistical information that will guide actions and policies to improve the health of the American people. National Family Caregivers Association http://www.nfcacares.org/ NFCA is predicated on the belief that caregivers that choose to take charge of their lives, and see caregiving as but one of its facets, are in a position to be happier and healthier individuals. Website list 8
National Hospice Organization http://www.nho.org/ Founded in 1978, the National Hospice Organization is the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care. NHO is dedicated to promoting and maintaining quality care for terminally ill persons and their families, and to making hospice an integral part of the U.S. health care system. The Nathan Cummings Foundation http://www.ncf.org/ncf/aboutncf/about.html The Nathan Cummings Foundation seeks to build a society that values nature and protects ecological balance for future generations; promotes humane health care; and fosters arts to enrich communities. New York State Partnership for Long-Term Care http://www.nyspltc.org/about/index.html#3 This Partnership is an innovative program that combines private long-term care insurance and Medicaid to help New Yorkers prepare financially for the possibility of needing nursing home or home care. Not Dead Yet http://acils.com/notdeadyet/ Americans with Disabilities want freedom and life. OncoLink http://www.oncolink.com The University of Pennsylvania Cancer Center provides easy access to a wide variety of cancer resources including current clinical trials, financial issues for patients and more. Oregon Health Sciences University Center for Ethics in Health Care http://www.ohsu.edu/ethics/ The Center for Ethics combines the perspectives of health professionals, patients, and families to improve teaching, research and clinical consultation about ethical issues in patient care and health policy. Website list 9
Oversight Hearing: "Assisted Suicide in the United States" -- April 29, 1996 http://www.house.gov/judiciary/2.htm This site will keep you informed about Judiciary Committee activities and other important issues facing our nation. Pediatric Pain http://is.dal.ca/~pedpain/prohp.html This site provides professional, research, and self-help resources for health care workers, researchers, and parents caring for children in pain. Project on Death in America http://www.soros.org/death/ The mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy. Resource Directory for Older People http://www.aoa.dhhs.gov/aoa/dir/intro.html This Resource serves older people and their families, health and legal professionals, social service providers, and others with an interest in the field of aging. The Robert Wood Johnson Foundation http://www.rwjf.org/main.html RWJ is the nation's largest philanthropy devoted exclusively to health and health care, and has made more than $2 billion in grants. SeniorScape http://www.seniorscape.com/ SeniorScape is a source for information on elder law, community resources for elders, senior health and nutrition, lobbying efforts, geriatric care, financial management in later years and much more. Website list 10
UB Center for Clinical Ethics and Humanities in Health Care http://wings.buffalo.edu/faculty/research/bioethics/index.html The Center for Clinical Ethics and Humanities in Health Care is an interdisciplinary academic center which draws upon a wide range of individuals from the School of Medicine and Biomedical Sciences as well as various health care and academic institutions. UW Pain and Policy Studies Group http://www.medsch.wisc.edu/painpolicy The UW Pain and Policy Studies Group is the study of public policy in relation to pain management, identifying and addressing the barriers to medical use of opioid analgesics. The Video Health Information Project http://www.sebridge.org/~vhip/ VHIP provides free access to consumer health information in a large collection of videotapes. When Death is Sought Assisted Suicide and Euthanasia in the Medical Context http://www.health.state.ny.us/nysdoh/provider/death.htm The New York State Task Force on Life and the Law published a 217 page report titled "When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context, and has been made available electronically Originally compiled by the Project on Death in America. Modified by the EPEC Project, 7/99. Website list 11